jmgoyder

wings and things

Making friends with dementia

It is inevitable: one of these days, I will rush into Anthony’s room, plonk a kiss on his lips, sit down next to him with a grin, put my arm around his shoulder, and he will not know who I am.

In my PhD research and subsequent book about dementia – eons ago – I talked about how, no matter how nonsensical or confusing the person with dementia’s stories were, it was still beneficial to have those conversations, to participate in what I called ‘storying’.

Fast forward to now and working in the dementia cottage has been an absolute gift. I have a job, albeit part-time, in which my role is that of “Lifestyle Assistant”.

Over the last several months, as both a volunteer and employee at the nursing home where Anthony resides, I have become more and more enriched by the relationships I’ve formed with the residents in the dementia cottage. Partly this is due to putting into practice much of what I learned and believed all those years ago when I simultaneously worked as a nurse in a nursing home and embarked on my thesis.

This job has taught me so much, not just about dementia itself and how it affects people differently, but about how vital friendship is to those who have dementia. Common sense really but it is often assumed that if the person with dementia doesn’t recognise you, you may as well not bother visiting, conversing, relating to them. But why? That person with dementia still needs your friendship even if she or he doesn’t know who you are anymore.

On entering the dementia cottage, I am mostly unrecognised as someone any of these ten women have met before (every yesterday has usually been forgotten), but I am still made to feel welcome, and warmly greeted by those who can still speak. The first thing I have begun to do, during my 3-7pm shift, is to greet each of the ten women individually, either with words, or a hug, or a joke, or the offer of a wheelchair walk.

I realised the other day that the reason I love the job so much is simply due to the fact that these women have become my friends, so much so that I have begun to miss seeing them on my days off. Since I only work six four-hour shifts per fortnight, that’s a lot of missing! I love these women (despite the fact that Anthony has often told me that I throw the word “love” around a bit too freely!)

The point is this: my ten friends with dementia may not know who I am, but I know who they are. I’ve read their histories, learned their personalities, and have now figured out which activities individual people most enjoy.

Dementia can be a cruel, debilitating disease which renders the victim helpless in so many ways. People with dementia need friendship but those of us without dementia should consider the possibility that we also need their friendship.

It is inevitable: one of these days, I will rush into Anthony’s room, plonk a kiss on his lips, sit down next to him with a grin, put my arm around his shoulder, and he will not know who I am.

But I will know who he is and, if he asks, I will simply say, “I’m your best friend.”

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‘Phinished’

My fantastic friend, Dr Nathalie Collins, at her graduation the other day!

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Ever since I met Nathalie, she has been either a breath of fresh air, or a ferocious wind. She talks a lot but she also listens. She can transform anything to anything with her wit and wisdom.

Dr Nathalie Collins is an incredibly skilled philosopher, so watch this space!

Congratulations, Nat!!!

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The gift of listening

Years ago I wrote my PhD about the importance of listening to people with dementia who were still able to speak. In the process of turning the thesis into a book for publication, I began to realize the importance of listening in general. At the time, Ming was a little kid and Anthony wasn’t so ill, so I would listen to Ming’s babble and Anthony’s hearty stories with equal attention.

Listening is not always easy because sometimes what you are hearing may not make sense, might be boring or inane or moany, could be longwinded and require patience.

To listen, you have to be able to shut up for awhile, give your own voice a break, and focus on the person you are listening to.

Yesterday, after my altercation with Ming, he broke down and begged me to listen to him and I remembered, with a thud of remorse, that he had been asking me this for some time.

So we sat down together, cried our eyes out in separate chairs and then he began the story of his 3 days away at the Southbound concert festival.

As I listened, I saw how his face glowed in the telling of each episode. After two hours, we were laughing again and I asked for an intermission. “That’s okay, Mum, we can do Episode 3 tomorrow.”

I am beginning to think that the best gift you can give anyone is to listen to them.

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There is a bird on my balcony

I have just remembered a rather strange coincidence. The first sentence I ever wrote of my PhD thesis was “There is a bird on my balcony.” At the time I was living in a tiny bedsit in Perth but I was lucky enough to have a balcony underneath a massive tree, so one particular bird would occasionally transit back and forth from the branches of this tree to my balcony. This bird seemed (to me) to have stories within itself – vast stories.

This sentence was soon deemed by my lovely, but rather formidable, supervisor as not being a good way of beginning an academic work. My thesis was about Alzheimer’s Disease and stories because, in working as a nurse in various nursing homes, I had discovered the joy of listening to stories told by people with dementia, no matter how fragmented. Long story short, my thesis passed and I rewrote it for publication as a book in 2001. That makes it nearly 12 years old now!

The bird-on-the-balcony sentence fell by the wayside but it still resonates with me and I remember it now with a nostalgic fondness for my own naivetee at the time and a big nod to the irony of now – in so many ways.

As I no longer have a balcony, I can’t post a photo of this wonderful bird; I don’t even know what kind of bird it was or what kind of tree it lived in. But I will never forget it.

The past is the past.

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